WE ALL STAND TOGETHER…..

Even if you are not local my guess is you would have heard of Stafford Hospital.

You may well remember the news coverage of the Francis report regarding the lack of patient care and the tragic and unnecessary deaths that occured between 2005 and 2009.  You will have seen in the news recently that the hospital has now been put into special administration. 

The things that happened are nothing to be proud of and at the time of these tragedies my guess is that the the people of Stafford felt,  as I did, very let down by their hospital and its governing body.  The bad publicity affected the staffing levels at the hospital as potential new staff did not want to work there for fear of damaging their career prospects and subsequently this affected the services that the hospital were able to run.  The accident and emergency unit is closed between 10.00 pm and 8.00 am and has been since 2011.  It was only meant to be temporary but is still in force.

Since the Francis Report a lot has gone on within the hospital to try and make sure that this sort of thing never happened again.  The hospital has recently been given a clean bill of health by the Quality Care Commission and people’s confidence in the hospital is starting to be restored. 
Why then this sudden downturn?  I quote from an extract from the recent Watchdog Monitor Report.  "The team concluded earlier this year that the troubled trust was neither clinically nor financially sustainable in its current form in the long term.”

In layman’s terms this means that the money is not there.  There is now talk of the hospital losing it’s maternity unit, the accident and emergency unit and other departments.  I have even heard rumours that there could be a danger of it closing down altogether.  There is also talk that the smaller Cannock Hospital could face similar cut backs or closure.

If you are a regular visitor to this blog page then you will know that the reason I write these blogs is to bring awareness of my Granddaughter’s as yet undiagnosed genetic condition and the battles that we face as a family when trying to provide for a child with various disabilities.  My last post was about the battle trying to get an assessment for a much needed special bed for Jess (that battle is still continuing by the way, watch this space) when you got to the bottom of it, it all boiled down to money and lack of Government funding.  Now we are faced with yet another issue which if you strip it down comes back to the same thing, not enough money being made available.   Cut backs are being made to benefits and lots of other areas of social importance.  

As a family we rely on our local Stafford Hospital. Jess was born there and although at the moment there is no diagnosis to explain her disabilities she is under the care of a Consultant at the hospital and has various appointments throughout the year.   Jess is fed through a gastrostomy button and should anything go wrong with that it is important that we are able to get to a hospital quickly.  Last year I had a stupid accident on my bike which resulted in my wrist being crushed.  As I help care for Jess this had devastating implications as I need to be able to lift her etc..  I was admitted to the hospital as a day patient and underwent an operation to mend my wrist by putting in a metal plate to hold the bones in place.  The operation was a success and the care I received was excellent.  I then had to attend Cannock hospital once a week for rehabilitation.  After just a few weeks I was able to drive again and slowly started to be able to get back to my role as carer.  Twelve months later I have full use of the wrist and only a scar gives away the fact that something was wrong.  Quite simply Stafford Hospital put me back together again and enabled me to carry on with helping to care for my Granddaughter.

Today you will also have seen on the news that the people of Stafford held a march from the town square to Stafford Hospital where a rally was held.  This march was to show the ‘powers that be’ that Stafford Hospital is now recovering from it’s past, the people need their hospital, they want to move on and look to the future. They want to show their support to the staff that work there, they have had to put up with a lot whilst all of these enquiries have been going on and yet they were not the ones to blame for the events of previous years, those people have gone.

My Husband and I were proud to join that march today.  I am fed up of vital services being forced to close and MP’s hiding behind the words ‘cut backs’.  I wanted to show my dissatisfaction today and support the hospital and it’s staff.  The atmosphere was amazing in Stafford.  Thousands turned up to show their support, lots of people had banners that they had made themselves, some giving personal reasons why they needed the hospital to stay open.  There were people there from all walks of life and all age ranges.  From the able bodied to the not so able bodied, all were there.
The march was peaceful and the atmosphere was good.  At the concluding rally held in the hospital grounds many people stood in front of the microphone to tell the thousands gathered why the hospital meant so much to them.  It was a show of solidarity.  It was a statement that said we need this hospital.  It was a statement that said enough is enough today we are making a stand.  It felt good to stand up and be counted and this afternoon in Stafford it felt good to be part of a community.

Take heed decision makers, the people of Stafford and surrounding districts are not a push over.  And for those who are naive enough to believe all that they read in the papers then you should have been there and heard the testimonials that were being given, 40,000 people cannot be wrong.

Win or lose, sink or swim
One thing is certain we'll never give in
Side by side, hand in hand
We all stand together

                                    

           

  

ADDITIONAL NOTE: (21.4.13)

After the excitement and adrenalin rush of yesterday’s Stafford March I have had time to reflect this morning on why I felt the need to take part.  I have been critical in the past of the way some of my own family had been treated, but that was not ill treatment by the whole hospital, it was down to the attitude or lack of understanding by particular individuals.  This was not confined either just to Stafford.  I have read that many of the problems were due to the lack of funding available for training or hiring better qualified staff, the emphasis being on reaching monetary targets rather than individuals.  I think this is true, as it seems to be something that runs through all Council and Government Departments throughout the country. Whilst money is a very important factor, it should not hamper the way PEOPLE are treated and their needs must be considered first.  So am I being hypocritical?  I don’t think so.  I did not march yesterday because I had forgotten what awful things have taken place in the past. I marched because I do not want that to happen again.  I marched because we need this hospital but we need it to be funded properly so that it can afford to attract the best staff and support them with the best ongoing training.  I marched because I want to see targets aimed at helping people in need, not at how much money can be saved. 

TRYING TO BUILD A FUTURE

Until after my Granddaughter Jess was born I had no idea what a struggle parents of children with different needs faced. I knew that there were systems in place to help such families but I had no idea of the reality of it all.
Ah…'THE SYSTEM’ that phrase that can either give you reassurance or fill you with dread! Things will be better now she is ‘in the system’ people had said which kind of leads you to think that help will be at hand and some of the burdens will be lifted.
WRONG … yes there are things in place to help but the hoops that have to be jumped through to enable people to qualify for this help is beyond belief. The Government are very good at saying how much they provide in the form of benefits etc., to help those with disabilities and their families. They are very good at making out that they are securing a future for such people, but have they ever tried these systems out for themselves? Has a Minister ever thought of testing them out under a false identity so that they can see exactly what red tape has to be cut through and even then there are no guarantees. I think not. The first hurdle to overcome is the dreaded D.L.A. form!
http://www.dwp.gov.uk/advisers/claimforms/dla1a_child_print.pdf
I have put a link to the form so that you can take a read through it yourself if you are not familiar with it already. The reason for the link is that in total this form is 73 pages long so be warned don’t try and print this at home unless you are prepared to sacrifice a small part of the rain forest! Until Jess came along I was aware of D.L.A. but I had never seen a claim form.
The first 31 pages are basically an instruction booklet telling you what each question means and how they want you to fill it it. Now surely if the questions were worded in such a way that it was obvious what they meant in the first place then some of our rain forest could be protected from the onset. Can you imagine having to fill in an exam paper which had a 31 page explanation as to what the questions meant at the beginning of it! And yet this form does lend itself to being ‘exam’ like. You have to pass to get financial help for your child – no pressure then!!
So with the first 31 pages put on one side for reference we now start the actual claim form which they have numbered from page 1 again. Not until you get to page 10 do you actually get chance to start to talk about your child’s disabilities and their needs. Now the test really starts.
For those that may have any doubt as to why DLA is necessary and what parents use it for I conducted a quick survey, these are just a few of the many responses:

Goes towards the cost of therapies, equipment and medicated special foods but does not cover all. Could not live without it as get no support services elsewhere

Allowed me to get a car on motability which I would not have been able to afford otherwise. My son has a non folding wheelchair which doesn’t fit in many car boots so we needed a bigger accessible car.

Helps pay for the astronomical electricity bills as a result of being in the house. Sensory equipment and medical equipment.

I could take the time off work unpaid to attend all the appointments – over 50 days in one year!

Petrol for all the hospital appointments

It is understandable that questions on the D.L.A. form need to be thorough so that the right payment is made to suit the child’s needs but does it have to be so complicated?
Now lets assume you have managed to get through the D.L.A. hurdle everything else must surely be simple?

WRONG… the following is our story but we know that we are not alone.

Jess needs a specially adapted bed. The cot that she is in at the moment is getting too small for her and it does not suit her needs.

For a start she is pump fed through her gastrostomy during the night. This is her main source of food and without it she would not survive as she does not eat enough solid food during the day to keep her alive. To minimise the risk of choking etc., her head has to be elevated 30 degrees during her night feed, at the moment this is achieved by having towels ontop of one another under the mattress and therefore raising it slightly at the one end where her head is.

Jess is now getting taller and also stronger (the special milk is doing it’s job). She does not always go to sleep straight away or sometimes she will wake up during the night. During these wakeful sessions she is quite happy to play in her cot, but to Jess play means standing up, usually on the part of the mattress that is raised and reaching over the cot sides to the extent that she has almost come over the top on occasions. This means that she cannot be left alone while she is awake and in her cot due to the risk of injury and therefore her parents are constantly either having to go up and down stairs to her or get out of their bed during the night.

A normal bed is not an option and neither is sleeping on a mattress on the floor as Jess has no sense of danger and if she was left to crawl around unsupervised then again there is a real safety risk, plus she would be able to get access to her electric feeding pump. The only answer is to get a specialist bed which has sides high enough that even an older child cannot get out. I have added a link below so that you can see the sort of thing I mean:
http://www.bakare.co.uk/solutions/special-needs-beds/tom-special-needs-cot-bed/
These beds also have fully adjustable mattresses so that the right elevation can be achieved safely.
We recently attended a disabled living event and Jess tried out one of these beds which was on display and was quite happy in it. We were assured that funding was available to help purchase one (there is a four figure price tag) all that was needed was a referral from Jessica’s Occupational Therapist.

NOW THE FUN REALLY STARTS…..

At the beginning of the year Jess attended a routine appointment with her paediatric consultant. He was surprised that she did not have a Social Worker or Occupational Therapist in place so he said he would send a letter of referral.

To date no contact has been received from this referral.

On the 21^st March Jess’s Mum (my Daughter) Emma telephoned the First Response Team advising them that Jess was in imminent danger of falling out of her cot head first, they said they would put her on a list and gave her a reference number. She was told that this would be passed to the Children’s O/T Services for a referral to their local service.

Emma then telephoned the O/T Services on the 2^nd April to chase up the referral and was told that the manager for the team had now left. No-one had filled their role for assessing new cases, however they expect this to be done by the senior O/T but they were on holiday until 22^nd April and nothing would be done regarding the referral until at least then.

She was then told that after the referral had been done then they would be referred to Disability Services Team and would then be sent out a questionnaire asking about Jessica’s needs, once they had that back they would only then put her on the waiting list for a bed assessment!

Since then after receiving another call from Emma expressing her dissatisfaction (to put it very mildly) they have now decided to bypass the referral to Disability Services and send the questionnaire directly to Emma to fill in and send back. Upon receipt they will then prioritise Jess’s case with either a priority 1 or priority 2 and add her to the waiting list. Priority 1 waiting list is currently a 6-7 months wait.

So all of this just to go on another waiting list to be assessed. Not to mention the fact that the funding for this bed will still have to be organised once the O/T has been out and done the assessment and that the beds are made to order so are not available immediately. At this rate you are looking at either Christmas or into next year and by that time the unthinkable will probably have happened.

If you have a child who does not have such risks then you can just pop along to your local Ikea and come back with a brand new bed. If you have a child at risk and you do not have a few thousand pounds to spare, then you have to wait around twelve months before anything can be done.

Emma has written a strong letter of complaint to the Council and I quote from this

“children are in need of specialised equipment to keep them safe, these are children who cannot speak for themselves don’t forget, not enough is being done. The UK raised £70 million for Children in Need last month, my child is in need, charities are willing to help her but not without this OT assessment. I cannot express enough the stress this is causing our family at the moment. I am sure when people give to charities for disabled children they do not expect this hoop jumping as part of the experience”.

Well said Emma, I am proud of you.

I am NOT proud of a local Council that would rather see a child risk serious injury for the sake of getting someone out to do an assessment which would probably take less than one hour of their time. A council which states on their website

“An Occupational Therapy team is available to work with disabled children and young people to enable them to carry out everyday activities more safely and easily in their home”.

It does not mention that there will be a waiting time of around 6-7 months and longer in some cases. Above that statement is a picture of a smiling young child in their new specially adapted chair – in reality the picture should be that of a child in a hospital bed after just having fallen out of it’s cot..

I am NOT proud of a Government that has parents of disabled children put under the stress of having to fill in endless pages of questions to be able to access the financial support they need.
Part of Mr. Cameron’s Easter Message reads:

“ I am particularly proud to lead a Government that has kept its promise to invest 0.7 per cent of our gross national income on helping the world’s poorest, and I am grateful that we have been able to partner with both Christian and non-Christian charities to relieve suffering overseas.
I hope you have a very happy Easter.”

Well I hope you had a very Happy Easter too Mr. Cameron and whilst I am in no way objecting to helping those who are suffering overseas, I think it is time to take another look at what is going on closer to home.